AIDS Action Committee’s Blog

Increased awareness of HIV status prevented an estimated 6,000 new infections in the U.S. between 2002 and 2004, according to a report in this month’s Journal of Acquired Immune Deficiency Syndromes. This is, of course, very good news – and is one indication of the value of HIV testing and prevention efforts. To put this number in perspective, I’ll briefly summarize the study and what I think are some of its most important points.

To estimate the number of prevented infections, the researchers relied on information from the Centers for Disease Control and Prevention (CDC). According to CDC, the proportion of HIV-infected persons in the U.S. who were aware of their HIV status increased from about 70.5% in 2001 to 74.2% in 2004.

This increased awareness of HIV status is important, because HIV-infected persons who are aware of their status are more likely to take steps to prevent transmission than HIV-infected persons who are unaware of their status. In addition, when HIV-infected persons know their status, they can seek the medical care needed to maintain or improve their health and quality of life.

Another important number that the researchers used for their calculation was CDC’s estimate of the number of new HIV infections per year. That estimate is 40,000 infections per year – or a total of 120,000 infections between 2002 and 2004. (It’s worth noting here that CDC is expected to issue a revised – and many expect higher – estimate of new infections in the near future.)

Using a mathematical model, the researchers then calculated the number of new infections that were prevented by increased awareness of HIV status. They came up with a best estimate of about 6,000 prevented infections – although the actual number might be as low as 4,000 or as high as 8,700. They also calculated that these prevented infections would save more than $5 billion by avoiding HIV-related medical costs and allowing people to continue working.

These are impressive benefits from a relatively small (3.7%) increase in awareness of HIV status. Unfortunately, the reason for this increased awareness is not known. The researchers speculated, however, that “Overall increases in testing rates and increased use of testing services by at-risk subgroups may have contributed to the reported increase.” They also noted that “other prevention initiatives likely helped as well” in preventing a rise in new HIV infections, despite the fact that the total number of people living with HIV increased by about 90,000 between 2002 and 2004.

At the end of their paper, the researchers make several insightful comments. They write: “One can argue that the incidence of HIV in the United States remains unacceptably high and that this indicates a failure of HIV prevention.” They then acknowledge that the first assertion – that infection rates remain unacceptably high – may be true. But they note that the second assertion – that HIV prevention has failed – goes against the facts. According to their calculations, if there had been no change in awareness of HIV status, the number of new infections per year would have risen from 40,000 in 2001 to more than 43,000 in 2004.

They conclude: “Although additional prevention activities are needed to reduce HIV incidence to lower than current levels, the success of past prevention efforts should not be overlooked.”

During the past month, some staff members at the AIDS Action Committee in Boston have been repeatedly contacted by sales reps from a company called Smart Genetics, which makes a test called HIVmirror. They’ve been asking for community input and help to spread the word about the HIVmirror.

The test analyzes the genetic structure of a person’s DNA to look for two specific mutations known as CCR5-Delta 32 and CCR2-64I.

In persons who are already infected with HIV, these mutations have been associated with slower-than-usual progression of HIV infection to AIDS. The mutations may also reduce the chances that an HIV-negative person will become infected.

Smart Genetics is marketing the HIVmirror test directly to consumers for $99. Their sales angle is that people will have additional “peace of mind” if they know they have genes that would slow the progression of HIV infection.

However, I have some serious concerns about the test and its marketing:

1) First, I don’t see any reason why a person should order this test on their own, without consulting a doctor. The test doesn’t indicate whether a person is HIV-positive or HIV-negative, so the concerns about confidentiality and stigma that motivate people to have anonymous HIV antibody tests wouldn’t apply here. There’s no stigma about having genes that might make a person a slow progressor.

2) Perhaps more important: What practical use would this information have to a person?

For HIV-positive persons: Although the presence of one or both genes might slow HIV progression, an HIV-positive person would still need to see their doctor regularly, have CD4 and viral load tests several times a year, and follow the guidelines for when to start or change HIV treatment. One danger is that, if an HIV-positive person concluded from the test that they were a “slow progressor,” they might decide to go it alone and not see a doctor regularly nor start treatment in a timely way.

For HIV-negative persons: If a person learned that they had one or both of these mutations, they might mistakenly think they were “immune” to being infected with the virus. This might lead to greater risk-taking that could ultimately increase their risk of becoming infected.

3) If a person were to have this test, I think they should do it under a doctor’s guidance. The doctor could provide context for the results, with the appropriate cautions for both HIV-positive and HIV-negative persons. But my guess is that most doctors would view the test as unnecessary, since it has few, if any, practical implications for preventing or treating HIV. That may be the reason why Smart Genetics has chosen to market direct to consumers – if you can’t find a compelling reason for a doctor to order a test, try marketing to the patient.

The POZ web site has an article from earlier this year about the HIVmirror test, with more opinions about the concerns that have been raised about it. Here’s the link.

Talk about perspective.  Right now, you can get a thoughtful view HIV counseling from someone who’s been in both the HIV counselor’s chair and in the client’s, being told of an HIV positive diagnosis.  Stewart Landers, JD, MCP, a long-time expert on issues of HIV/AIDS, LGBTI health and substance treatment, selflessly peels away the surface and takes time to share his experienced lens.  Read the full piece on LifeLube.org’s Blog.

—Diego

I think it’s not a coincidence that the move to reduce or eliminate counseling as part of HIV testing comes at the same time many are pushing for “routine” or other forms of expanded HIV testing.

The main barrier to widespread HIV testing has been providers’ discomfort or lack of willingness to “go there.” That is many do not want to talk to their patients about a stigmatized disease that may suggest behaviors they (the provider) are uncomfortable discussing or providing counseling or other information about.

Getting a positive test result for HIV is still a shocking piece of news for most people. It changes the course of their lives - how they think about partnering, parenting, sexuality, survival, work and much more. While I’m all for the mainstreaming of AIDS care and the de-stigmatization of the illness, I often find myself in a quandary about how we do that and still acknowledge all the life changing aspects of the illness.

—Stewart  (read full post)